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Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)

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  • Anya E. R. Prince
  • Wendy R. Uhlmann
  • Sonia M. Suter
  • Aaron M. Scherer
Abstract
Globally, due to public concerns of genetic discrimination, some countries and insurance industries have adopted policies restricting insurer use of genetic information, such as the US Genetic Information Nondiscrimination Act (GINA). This study reports on a combined analysis of two surveys assessing public knowledge of GINA and concerns of genetic discrimination in a diverse US sample (N = 1616). We focus on whether occupation, genetic testing history, and insurance status are correlated with knowledge of GINA or concerns of discrimination. While bivariate analysis identified some populations with higher subjective/objective knowledge and concern relative to counterparts, multivariable regression identified very few significant associations with outcomes of interest. Overall, this study highlights a lack of awareness and understanding of GINA, even among subpopulations hypothesized to have greater knowledge of the law. These findings have implications for the broader debate around insurer use of genetic information.

Suggested Citation

  • Anya E. R. Prince & Wendy R. Uhlmann & Sonia M. Suter & Aaron M. Scherer, 2021. "Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)," Risk Management and Insurance Review, American Risk and Insurance Association, vol. 24(4), pages 341-365, December.
    • Handle: RePEc:bla:rmgtin:v:24:y:2021:i:4:p:341-365
    DOI: 10.1111/rmir.12195
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    References listed on IDEAS

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    1. Macdonald, Angus & Yu, Fei, 2011. "The Impact of Genetic Information on the Insurance Industry: Conclusions from the ‘Bottom-Up’ Modelling Programme," ASTIN Bulletin, Cambridge University Press, vol. 41(2), pages 343-376, November.
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